Get to know members of your audience (the people who will be reading the
material). Ask them for their input and suggestions.

Example

With today's technology it is easy to include your audience in the development
of your material. Contact condition-specific organizations. For example:

If you are working on material related to muscular dystrophy, contact
Parent Project Muscular Dystrophy (PPMD) at www.parentprojectmd.org.

If you are working on material related to Fragile X, contact the FRAXA
Research Foundation at www.fraxa.org
or the National Fragile X Foundation at www.fragilex.org.

For other genetic conditions, visit www.geneticalliance.org
to see if advocacy organizations for the specific condition exist.

Many organizations have active online support communities or medical advisory
councils who are experts in the field. Use the experts, professionals, individuals
with the condition, and/or caregivers to ensure your material will meet
your audience's needs.

Ask your audience to identify information that would be most useful for them.
For example, do they want to know about the natural history of the condition
or do they want to know about resources for treatment of the condition?

Example

You've created a pamphlet for Fragile X and your audience is individuals who
are new to the diagnosis. They need information in laymen's terms. If you
want to define the gene, you need to keep it simple and brief (see *work with
your audience to develop the material.)

Before:

FMR1, located at Xq27.3, consists of 17 exons and is approximately 38kb in
size 1;2. The mRNA is approximately 4.4kb and contains 1.9kb of coding sequence.
Within the 5 untranslated region (UTR) of FMR1 is a polymorphic CGG repeat
coincident with a rare fragile site on the X chromosome known as FRAXA. FRAXA
was a cytogenetic marker instrumental in the identification of patients and,
ultimately, the gene itself.

After:

Fragile X is a family of genetic conditions, which can impact individuals
and families in various ways. These genetic conditions are related in that
they are all caused by gene changes in the same gene, called the FMR1 gene.

Many terms are archaic and may induce negative images, creating pity, fear,
unjustly stereotyping individuals and may be offensive to the audience, whether
it be individuals who are caregivers or those who have the diagnosis. Respect
the individual and the caregivers. Recognize the person first, then the diagnosis.
Don't use labels or archaic terms.

Example

Before:

Fragile X syndrome is the most common cause of mental retardation. This impairment
can range from mild to severe retardation.

After:

Fragile X syndrome is the most common cause of inherited mental impairment.
This impairment can range from learning disabilities to more severe cognitive
or intellectual disabilities.

For example, if your audience is mainly African American, use pictures that
show African American individuals. If your audience uses wheelchairs, use
pictures that show people in wheelchairs. If you are writing general material
that is applicable to a broad audience, include pictures that capture the
range of people affected. For example, a brochure discussing cystic fibrosis
should include picture of ethnicities other than Northern European because
other ethnicities are affected or a pamphlet on Fragile X should include pictures
of girls as well as boys.

Use a professional who knows the condition you are writing about (or knows
medical terminology) to translate your material. Each language has fine points
that would be known to a professional translator but not known to a computer
program or to a lay person who speaks the language.

Materials should also be back translated, which means once they are translated
from English into another language they should be translated back to English.
This provides a way to check the translation, especially when you are not
familiar with the language. Translated materials should ideally undergo testing
in the target population to assess cultural sensitivity issues.

The average reading level of U.S. adults is 8th-9th grade. One in five adults
read at the 5th grade level and below. Research suggests that printed materials
for parents should aim for the 6th grade reading level. Materials written
for professionals should aim for a reading level at the 12th grade level
or lower. ["Adult Literacy in America (NALS)" National Center for Education
Statistics, U.S. Dept of Education, Office of Educational Research and Improvement
(NCES 1993-275), April 2002.]

You can check the reading level of your material using a number of
different tools including the Fry, SMOG, or Flesch-Kincaid readability
formulas. The FRY and SMOG formulas involve counting words and syllables
in a selection of text. The Flesch-Kincaid method also estimates the
reading level by counting words and sentences, but is considered less
accurate than the FRY and SMOG. Microsoft Word will calculate reading
level using the Flesch-Kincaid method.

Organizing information into a question and answer format makes the information
easier to remember. It also helps people find specific information quickly.
The best headers are those that express a complete thought or idea. (Doak
and Doak, 1996)

Example:

Paragraph Format
Duchenne muscular dystrophy (DMD) is caused by a mutation in a specific
gene within the X chromosome that provides instructions for the formation
of the dystrophin protein. Females can be carriers but generally do not
experience the symptoms of the condition. Duchenne muscular dystrophy occurs
in approximately 2 out of 10,000 people and can either be inherited or occur
spontaneously. A family history of Duchenne muscular dystrophy is a significant
risk factor.

Question-and-Answer FormatHow common is Duchenne and Becker Muscular Dystrophy?
Duchenne and Becker Muscular Dystrophies together affect 1 in 3,500 to 5,000
male births. Between 400 and 600 boys in the United States are born with
these conditions each year. Females are rarely affected by these forms of
muscular dystrophy.

What genes are related to Duchenne and Becker Muscular Dystrophy?
Mutations in the DMD gene cause Duchenne and Becker types of muscular dystrophy.
The DMD gene is found on the X chromosome.

Try to limit each piece of material to 3-4 key concepts. Including too much
information in written material makes it difficult to understand. People
who are unfamiliar with the condition may find it overwhelming to have too
much information included in one piece of material. Covering too much information
will make your key points difficult to find. Remember that you can create
a number of different materials to cover all the important topics.

Example:

What is the condition?

How common is the condition?

What genes are related to the condition?

How is the condition inherited?

Where can I find more information about:

The condition?

Treatment?

Each of these topics could make up a separate unit of information. Think
about the right level of detail to include for your audience. You might
look at well-established support groups (e.g., www.parentprojectmd.org)
to get an idea for ways to separate the information.

In general, short words tend to be more common and are better to use (doctor
vs. physician). There are some common words that are hard to understand
because they are vague or have multiple meanings. For example, the phrase
"test results in the normal range" does not describe what is 'normal', and
'range' has a number of different meanings, depending on the reader's personal
experience. Be as specific as possible and test the materials with the end
users to make sure they understand the information by creating a survey
or talking with a group of them.Avoid terms that parents may find offensive, such as mentally retarded. Use current terms such as intellectual disability.

Helpful Hints:

Use the Google "define:" function to find alternative words and synonyms.
Go to www.google.com,
type define: your word (replace "your word" with whatever word
you are looking up). For example, define: subcutaneous gives under
the skin and beneath the skin as alternatives.

Example:

Medical Term

Common Word(s)

cardiovascular

heart and blood vessels

Categories

groups

Cautiously

with care

Chronic

does not end or constant

Cognitive

learning or thinking

The active voice shows the subject of the sentence performing the action.
The active voice is more clear and engaging for the reader. The passive
voice is signaled by the verb 'to be'.

Example:

Passive Voice

Active Voice

Treatment must be done every day.

You must do treatment every day.

Your lungs will be tested by a doctor.

A doctor will test your lungs.

Short sentences are easier to understand than long sentences. "Short" means
15 words or fewer. Sometimes longer sentences sound better and, in that
case, it is better to use more words. Try to take out extra words and use
specific language. Each paragraph should discuss only one topic and have
a clear opening sentence.

Example:

BEFORE: The Dietary Guidelines for Americans recommend a half hour or more
of moderate physical activity on most days, preferably every day. The activity
can include brisk walking, calisthenics, home care, gardening, moderate
sports exercise, and dancing.

AFTER: Do at least 30 minutes of exercise, such as brisk walking, most days
of the week.

Concrete examples are easier to understand than abstract ones. Including
examples can also help to form a mental image of the concept and make it
easier to remember.

Example:

Abstract
Alzheimer's has its share of safety hazards and everyday activities can
be dangerous and difficult.

Concrete
When a person has Alzheimer's, everyday activities such as driving a car,
chopping vegetables, getting the right water temperature, or turning a stove
on or off can be dangerous.

Start with a clear title. Be sure to include the purpose of the material.

Organize ideas in the order that the audience will use them. The organization may be different for different audiences. For example,
1) description of the condition, 2) diagnosis of the condition, 3) treatment
of the condition, and 4) inheritance and recurrence risk.

Use major headings to "chunk" text. The headings should express a
complete idea, rather than just a word or two, to tell the reader the
type of information that will follow. Leave more space above headings
than below them to make a stronger connection to the text.

Place the most important information at the beginning and end of the
document.

Sentence format
Many readers frequently move back and forth between text and pictures. Having
pictures can help readers better understand the words, clarifies the words'
meaning, enables them to construct or elaborate a model of the situation,
and aids in building a mental model of the unfamiliar.

Use graphics to help communicate your messages, not for decoration.

Choose the best type of graphic for your materials: photographs (real
life events, emotions), line drawings (procedures, sensitive issues),
or cartoons (set casual tone or convey humor). Each can be useful for
different purposes.

Make graphics culturally relevant and sensitive.

Make graphics easy for your readers to follow and understand by including
captions and emphasizing key information.

When illustrating internal body parts or small objects, use realistic
images and place them in context.

BEFORE
This is a multipurpose passenger vehicle that will handle and maneuver differently
from an ordinary passenger car, in driving conditions that may occur on
streets and highways and off road. As with other vehicles of this type,
if you make sharp turns or abrupt maneuvers, the vehicle may roll over or
may go out of control and crash. You should read driving guidelines and
instructions in the Owner's manual, and WEAR YOUR SEATBELT AT ALL TIMES.

AFTER

Use white space, bullets, and headings to organize your material and
keep it from being over crowded.

Limit the amount of text on each page.

Leave white space around the margins of the page and between columns.

Use a font size of at least 12 point. Headings should be larger than
the size of the rest of the text.

Do not use fancy lettering.

Do not use all capital letters.

Use bold or underlining to emphasize text.
Limit the use of italics because they are harder to read.

Headings and bullets divide up text and give "sign posts" to help the reader
know where they are in the document.

Example:

No Headings
Duchenne muscular dystrophy (DMD) is caused by a mutation in a specific
gene within the X chromosome that provides instructions for the formation
of the dystrophin protein. Females can be carriers but generally do not
experience the symptoms of the condition. Duchenne muscular dystrophy occurs
in approximately 2 out of 10,000 people and can either be inherited or occur
spontaneously. A family history of Duchenne muscular dystrophy is a significant
risk factor.